Archives for December 2015

I know I haven’t had an update in a wee while but, like everyone else, things have been so busy, and with Christmas only 10 sleeps away our house is very excited!

Since my last post we have been going through the normal day-to-day routines of work, school, homework, after school activities, appointments, days out, nights out, family time and Christmas preps! Throw into that two months of sickness back and forth between Max and Lucia and it’s been pretty hectic! However, I read this quote lately and it really resonated with me and as each day flies by I try hard to remember it:

Life is amazing and then it’s awful and then it’s amazing again and in between the amazing and the awful it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That’s just living heartbreaking, soul-healing, amazing, awful, ordinary life and it’s breathtakingly beautiful. – L.R. Knost –

‘Time flies’ is one of those huge clichés you always hear – but it really does. At the minute I feel like when I blink another week has passed by so I am trying hard to appreciate the little things that make up life on a daily basis. So when I catch myself shouting ‘hurry up’ to the kids for the 16th time I try to rein myself in a bit!

Welly boot fun!

Part of our ‘ordinary’ is of course looking after Lucia’s Lymphoedema and all of things we do to maintain it is just part and parcel of our everyday routine now. We still struggle with footwear but this a struggle we are now used to. And because Lucia is still happy in her Converse – which is now very much her signature style – we can manage that. The only thing is her poor feet are freezing in the winter. Also, Converse are no good for jumping in puddles, but thanks to advice from a lovely friend who also has a little girl with Lymphoedema we were able to get Lucia a pair of bright yellow welly boots from Next (she is wearing them in the photo!). Click here to see them.

They are fleece lined, really deep, wide, comfy and warm and she loves them! She has been out splashing in puddles many times over the last while and they were also super for getting out in the snow we had at the weekend! Our weather can be pretty miserable at times but through a child’s eyes what can be more fun than dancing in puddles and building snowmen!

Make-shift sparkly shoes!

This last week has also saw Max and Lucia taking part in their school concerts and we have been very proud parents watching them on stage with big smiles on their faces.

Lucia was an angel in her nativity and wore a beautiful white dress, wings, a sparkly halo and sang her little heart out! There were five angels and I knew the other little ones would probably be wearing lovely sparkly shoes with their costume, so to make sure Lucia didn’t feel left out I made her make-shift sparkly shoes by gluing and taping tinsel onto her Converse – and she was absolutely delighted with them!

Sore legs

A big part of our day is carrying out Lucia’s lymphatic massage but over the last while we haven’t been able to do it as often because the sickness feels like it has been never ending. Both Max and Lucia have had constant colds, coughs and temperatures for the last eight weeks and when Lucia is ill, massage is a no-no as it can prolong the sickness.

During this time she had her first experience of sore legs. Thankfully Lucia very rarely complains about having any pain in her legs and feet but a few weeks ago when she was feeling very poorly she suddenly started crying and shouting ‘my legs, my legs’. We checked all over for signs of redness or infection and there was none, however her swelling was harder and tighter than normal so we think it was maybe the added pressure of her body fighting the illness that caused the pain. At least, that’s our guess. It happened a few more times that day before settling again.

It is times like these that we struggle to understand how she is feeling and we feel a bit helpless because we just don’t know. So anyone who may be able to shed a bit of light would be much appreciated.

That’s life

I know this post is a bit of a mish-mash of everything but I guess that’s life! Christmas is just around the corner and I think I am as excited as the children. It is such a magical time and I can’t wait to spend more ‘ordinary’ and lovely time with my family.

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More